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Thursday, 9th September 2010

Hannah's all smiles on special lily pad

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Published Date:
04 April 2008
It's bouncy, it's bright and it's helping little Hannah Johnson to find her feet.
The two-year-old, who suffers from a rare disease, looked delighted as she was placed in the comfort of a "fibre optic lily pad" – a life-changing gift from a children's charity.

The pad, which cost hundreds of pounds, was donated to her parents, Mark and Rebecca, by Sunderland charity Hope 4 Kidz and it's already having an effect in stimulating her senses through the use of fibre optic lights.

Hannah, of Low Moorsley, Hetton, is one of only 65 children in the world diagnosed with chromosome deletion syndrome.

A missing part of a vital chromosome causes the rare disorder, which can lead to defects in major organs, developmental delays and learning disabilities.

As Hannah gurgled with pleasure on the pad in the bedroom of their home in Tynedale Street, Rebecca, 23, said: "I'm absolutely delighted and grateful. It's helping her interact – she'll co-operate more because she's calm and relaxed.

"She loves her family but she doesn't like being handled. It helps when she gets stressed.

"She goes to Sunningdale School three days a week. There's a light sensory room there, which is her favourite."

Rebecca underwent a medical test because she lost a child with spina bifida prematurely in 2003. She said the test showed there was a high risk of Hannah being born with Down's syndrome.

"When Hannah was four days old she became poorly and I had some further tests and we found out after that," said Rebecca, who has two other children, Lily, five, and Alex, who is 13 weeks old.

Although she is only two, Hannah has already been through five major operations, including two for open heart surgery.

Rebecca said: "She has congenital heart disease and is unable to feed. She's tube fed. We're just learning as we go. She can't sit up or walk but she can make sounds. She's very happy and content."

Hope 4 Kidz aims to improve the lives of children by providing medical, learning and leisure equipment for children suffering from severe illnesses, disabilities or hardships.

Viv Watts, from the charity, said: "We're thrilled that we're able to help Hannah in some way to improve her life. We look forward to being able to help more children like her in the future.

"From our point of view we're delighted to be able to give Hannah new skills. That's all it's about, making life better for her.

"It's unbelievable. It's changed her little outlook. She's co-operating, she's trying to speak, her movement's improved. It's fantastic."

Plans are already under way to raise more cash so other kids can benefit. Hope 4 Kidz next fund-raising event will be held at My Legends, Sunderland, on Saturday, May 10.

Patron for the charity, TV and recording artist Peter Grant will be performing at the Black Tie Ball with the Las Vegas Show Girls, and Andrea De Vere on saxophone.

Tickets for the ball are £45, which includes a champagne reception and a four-course gourmet dinner.

For tickets or more information, contact Hope 4 Kidz on tel. 534 7788 or 0781 8022 3081.


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  • Last Updated: 04 April 2008 3:30 PM
  • Source: n/a
  • Location: Sunderland
 
 
 

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